We want to see reform of the PIP assessment

The Government recently announced changes to Personal Independence Payment (PIP) that would tighten up access to PIP for disabled people. We are concerned that this will result in disabled people missing out on vital support to help meet some of the additional costs they face as a result of their impairment or condition, on average £550 a month.

This shows that the PIP assessment is not currently working effectively for disabled people. Below, Abbi, a young disabled woman, shares her experiences of the process of applying for PIP.

Abbi’s story

When the little brown envelope informing me of the need to apply for PIP dropped through my letterbox, I was nervous.

Since first qualifying for Disability Living Allowance (DLA) in 2009, my health has deteriorated. Both the benefit itself and the access to the higher rate for the mobility component have made coping with this significantly easier.

With my mobility continuing to deteriorate, the thought of being rejected for PIP (as has happened to many of my disabled friends and contacts) filled me with fear.

“It did not seem to have been designed for disabled people”

Applying for PIP was a complicated process and one which did not seem to have been designed for disabled people. First, I had to spend 45 minutes on hold to the Department for Work and Pensions (DWP) to confirm that I wished to apply. Ironically, I only had time for such a call because I was off work for health reasons.

I have a hearing impairment and once the phone was answered, I found it very difficult to hear the speaker. However, a request to conduct the conversation over email rather than by phone was refused.

The rest of the process told a similar story. I filled out an application form which did not leave sufficient space for me to detail all of my conditions and medications.

“My assessment took one and a half hours”

I had to reschedule my first assessment due to access issues and was told that assessments can only be rescheduled once. If I was unwell on the day of the rescheduled assessment, I would have to apply again.

Upon arrival at the assessment centre, a sign on the door informed me that my assessment would take no more than 20 minutes, yet my assessor did not appear to have any of the information which I had painstakingly written out in my application form. Instead, she expected me to answer every question again, verbally.

My impairments are complex, but nowhere near as complex as those of other disabled people I know. My assessment took one and a half hours.

The PIP system remains inefficient

When the news came, I was incredibly relieved to hear that I would be awarded the equivalent of what I was awarded under DLA. I still have access to both the services and the funding which permit my independence. I can plan for a future, even as my mobility deteriorates.

However, when I read the Atos report on my health, I found multiple serious errors. It included the suggestion that I experience one of my most disabling conditions ‘once a month’.

I don’t understand the confusing series of deadlines by which I was supposed to have submitted different documents or why those documents were so blatantly dismissed.

Four years after its foundation, the PIP system remains inefficient, inept and, in many cases, potentially harmful to the mental and physical health of many disabled people in the UK. I am immensely grateful for the assistance and security which my PIP award affords me but, as the government threatens further cuts to PIP, I remain fearful for others who have yet to apply.

With one week to go until changes to PIP come into place, we are calling on Government to think again. We are briefing government officials about why it is so important that they don’t go ahead with these changes.

Instead, we want to see reform of the PIP assessment so that it accurately captures the range and level of disabled people’s extra costs.

11 thoughts on “We want to see reform of the PIP assessment”

I applied for and got DLA in 2010 but signed off when I went into remission. This didn’t stop Atos from hounding me to go for a medical for several months after I was no longer claiming this benefit. When I was deemed to be in the chronic phase of the condition (IE with little further chance of remission) I tried to claim PIP but was turned down. The process was an administrative nightmare and I’d tell you about all the mistakes made by all the departments/people involved but we’d be here for days.

When the DWP asked for feedback about the process I submitted mine and encouraged others to do so. It was heart-breaking that the process of giving this feedback was the first time my access needs were met by the DWP – they were not met during the claim process. It was even more heart-breaking that many people didn’t feel able to give feedback to the DWP because the process of applying for PIP had been so bad for them that they couldn’t face thinking about it and didn’t want to relive the nightmare. I completely understand and support their need to protect themselves and tried to communicate their distress to the DWP.

While I support Scope’s view that the assessment should focus on the additional financial needs of people with disabilities, I am concerned that this could work against people with rare conditions. There are rarely any treatments available and getting a care plan (which might indicate costs) is difficult since there is often scant information available to include in one. I was asked to list my expenses at the tribunal, which I did. But since there is no research that provides evidence that my treatment expenses modify or help to manage the condition, it was not accepted that they are necessary. Many people with rare conditions, including the one I have, are told to ‘go home and learn to live with it’ which is a cheap option both for the health service and the benefit service. Yet just getting a diagnosis with a rare condition can be a hugely expensive and time consuming process which is not reflected in the current claim process. Because I didn’t get PIP I have had to cut some of the treatments that were helping me (and I know this is the same for others with both the condition I have and other rare conditions). As a result, my health is deteriorating. Please don’t leave the 1 in 17 people in the UK with a rare condition out of your proposals, thanks 🙂

THANKYOU FOR SUCH A SUCCINCT YET FULL OF ANGUISH ARTICLE I WAS RENDERED HOUSEBOUND AFTER WHICH IT WAS RECOGNISED THE MANY NEURO COMPLEXCITIES ??? WITH FURTHER CONDITIONS DIAGNOSED ! I HA AN ANNEXE , IT ONLY HAS A BED & WET ROOM , DUE TO SEVERITY ! I LIVE WITH PARENTS ONE WITH AZ AND OSTEPOROSIS , THE OTHER
WITH CHRONIC ARTHITIS ! I HAVE SAID GIVEN I CANNOT FILL THE FORMS DECIDED EVEN THOUGH THEY REQUIRE SUPPORT TO PAY MY HEATING ! AND YET A SEVERE LACK OC FUNDING VIA SO MANY CHARITIES SCOPE WERE PATIENT & WHILST COULD ONLY SIGN POST ONE NONE HAD ANY SUPPORT DUE TO FINANCIAL CONSTRAINTS , SO , AS THE CHAP RE : BBC ONE I FEAR IT IS ENTIRELEY TRUE TO SAY AS REGARDS , ‘ THE DISSABILITY LAW ‘ ! IS PRETTY MUCH A THROW AWY TERM ? WHICH GIVEN I WORKED IN A PREVIOS LIFE WITH DISSABLED CHILDREN ,AND PARENTS ! I HAD FINALLY. A BA HONOURS IN EARLY CHILDHOOD STUDIES , PRIOR TO THE ACCIDENTWHICH DESTROYED NOT ONLY BODY , ALSO SOMETHING I HAD AS SO MANY WORKED NAFFING HARD TO GET ? SORRY LAST BIT ! I HAVE THRASHED OUT ALL OPTIONS , THIS MEANT I CANNOT APPLY SIMPLY COS I AM DISSABLED ! SHOULD ANYTHIG COME ALONG I LET YOU NO ! EXCUSE SPELLING ERORRS TREMORS CAUSE HSNDS TO SLIP GOOD LUCK TO ALL REGARDS DITZY GIRL1

I’m in the slough of despond, to put it mildly, as I’m in the process of being changed over from DLA. I’m sitting with the PIP form in front of me but every time I pick it up, I can’t bear it and throw it down again. One of the aspects that make me angriest is the cost of household goods. If you have dexterity problems (and living alone, as I now am), you can never take advantage of cost-cutting large sizes or special deals. One example is toothpaste; I spend a fortune on small tubes because I simply can’t wield the classic size. Translate that to bottles of olive oil or bleach and so forth and you’re paying a huge premium for being disabled. And don’t talk to me about the expense of everything else that healthy people don’t need to buy!

I am so scared of getting the PIP envelope and having an assessment. Last time I had an assessment with ATOS, the assessor said she had never heard of my cognitive impairment. I have Cerebral Palsy, which is one of the most common disabilities. The cognitive impairment, which is a part of it, affects numbers( including money) and sense of direction. Given that two of the questions are on budgeting and finding your way around, I have no confidence in getting a proper assessment.

I have recently changed over to PIP from a lifetime award on DLA. I did get a good result I have to say, but if these changes go ahead it will be a different story. Since claiming DLA in 2008 my health has deteriorated, I have mainly musculoskeletal problems, Degenerative Disc Disease, Arthritis and recently Fibromyalgia. I also have Diabetes, high blood pressure and Fibroids. I don,t have mental health issues persay but the amount of pain I suffer everyday and the painkillers I take have their own side effects, so I would come under these changes in 3 years time when my award is up for review. I have to have my daughters with me when I go out, I cannot go out alone as I suffer from ocular migraine because of nerve damage in my neck as the discs here have crumbled to virtually nothing, which cause my sight to become blurred, doubled and I become totally disoriented. I find now also I am becoming increasingly incontinent due to changes in my lower spine and having fibroids on my ovaries too. When the urge to pee comes on I have to go straight away I can,t wait or hold it in and I have a fear of wetting myself in a public place, this causes me anxiety on a big big scale. So I don,t go out unless I have to. and never on my own. My health problems affect my life massively and the stress, anxiety, depression from constant pain is as real as any physical conditions and should be treated as separate issues. Without the help from PIP I will just become totally housebound and unable to eat a healthy diet for my diabetes and weight management. I can understand 100 % how people give up completely. I am scared and I still have 3 years left on my award. It’s not right that people who have health issues to deal with everyday aren,t going to be allowed any relief or quality of living. Stress causes most things to become magnified . Stress is still one of the most prevalent silent killers of our modern world but funny how this isn’t mentioned anymore.

HEY I NO NOT WHERE TO START OR END ? A SPINAL INJURY CAUSED BY : FAILURE TO DIAGNOSE ! PROMPTLY FOLLOWED THEOUGH BY A DRUG , RENOWNED CAUSING INTERNAL BLEEDING ALL OFFERED ON SCREEN TO A TOTAL D. HEAD FAMILY HISTORY ! ,’ DONT PRESCRIBE “! YEP ! HE DID & A WORLD , WHICH AS MOST DONT, EVER WISH TI DISCUSS OR EXPLAIN TO OTHERS ! WHY ? IS IT AS WE ATTEMPT TO CLOSE , PANDORAS BOX,’! NOW WITH ALL THE SUBSEQUENT COMPLEXCITIES ! ! THAT BROWN ENVELOPE HAS CAUSED SO MUCH STRESS ! I HAVE SAID I CANNOT FILL THEIR DAMN FORM ! I HAVE BEGGED HELP TO FILL THE FOM IN , BUT NOT ONE DISSABLED GROUP HAS ENOUGH PEEPS TO OFFER A HOME VISIT ! TREMORS CONTRIBUTE TO INCOMPREHENSIBLE WRITING ??? ANYONE WHO KNOWS WHAT I SHOULD DI , PLEASE HELP AREA SHIRLEY NEAR WEST WICKHAM KENT SORRY SOMEONE ELSE HIT THE NAIL ON THE HEAD , WHEN SATING HOW HARD & SOUL DESTROYING IT ALL IS ! THANKS FOR LISTENING ELIZA

MY daughter had a stroke in 2015 she was eventually awarded the high rate pip after I appealed.in fact it was overturned before it got to the appeal board.they are now wanting an update to see if any thing has changed,which has,nt.I am waiting for a response to the form I filled in and am dreading them telling me that they are going to stop it.As she is far off being independent.

Had a similar experience when I applied for ESA. I was applying with a vocal disability yet there was no alternative to using the telephone, so I had to get my mum recorded as my representative for calls, which seemed pretty ridiculous. I also thought the rule that you can only reschedule once seemed absurd in the circumstances. The whole process is designed to be something of a bureaucratic marathon.

I was on full rate mobility and middle rate care as I have remitting relapsing ms.i went in a taxi to the pip offices.i was with the woman Robin a for about an hour and a half.she said a few things wrong.i have gone from 450.00 per month to 270.00 per month I 2as on dla indefinetly.i told her I went blind in right eye 18mths ago due to ms I have my site back as such but have to wear verification. She said I wear them only for reading which is a lie I have to wear them full time as can.t see without them.i went to opticians other day which I have been giving other verifocals as my left eye is working distance wise for my right eye.i also need stronger prescription for right eye.she also said I can walk.i can walk the distance of 3 double decker buses on a good day.i have had ms since 2005.i did not have many relapses till last few years.i lost my sight. Got numbness on face and can hardly walk.went to neaurologist last week the 11th I think he saw that I can hardly walk.i left him on tues and since I got back I am slurring my words.i went back to docs with slurring thinking I had a stroke.but they put it down to ms again.i have not been so well due to ms feeling sick and staggering every where so not been able to get my new glasses as yet.i am sick with ms and I need help now waiting on ms nurses being in touch with me as now I feel I need all the help I can get as my mobility is a lot worse I am frightened I go blind all together and my mobility gets alot worse I have an 11 yr old and 70yr old mum who also lives with me..

I am just one of the latest ATOS victims! I changed over to PIP October last year and didn’t get awarded anything even though every day is a struggle and now I cannot afford to feed my ASD son. I askedthem to reconsider after getting help with the letter from CAB and still they turned me down. They said I was capable of doing certain things which I am not but would not budge from their decision. My son changed over just before me and got awarded the care component but he was getting mobility before but not now. They say he can follow a route on his own, NO HE CANNOT! he does not even leave the house on his own. It would be nice if the gov did not do what they want all the time and do what we need. Who says they have any rights to say mental health is not a disability. No one at ATOS is even medically qualified. It is disgusting what this country has come to! We are not trying to rip off the gov we are just trying to survive which is all benefit allows us to do in the first place and now they have taken it away! I would just like to put Theresa May in my life for a week and see how the copes on so little money. Actually didn’t all MPs get a pay rise recently. I wish that man in London had got to the houses of parliament because someone needs to teach them a lesson.